So as some of you know, we recently went for a swallow study to determine whether or not Gideon was aspirating (inhaling fluids…milk/water…into his lungs) while eating. Many children with Gideon’s disorder require their liquids thickened because of this problem. Even though I was confident that he wasn’t aspirating, the information that this test would provide was necessary if we were to receive nutritional & feeding support through the Early Childhood Intervention program.

So we went to Medical City Dallas and found out, unfortunately, he is aspirating.

Two things about  this study. 1) It went SO much better than the GI test  and 2) Gideon screamed the whole time as he was being forced fed.

I tell you this because I think it’s important to note that Gideon only aspirated a small amount twice, within that 15 minute feeding session. I think that’s pretty darn good considering he was screaming!! Also, I think it’s worth mentioning that my son has not been in and out of the hospital with respiratory issues like a lot of these babies- which suggests to me that it’s not happening that frequently here at home. He’s a year old, never had any liquids thickened and (knock on wood) he’s never had lung problems!!

The concern about him eating arose in December, when Gideon officially started on a supplement called Betaine. This Betaine study is why we went to Omaha back in September. After being on the Betaine for about a week, we noticed that he stopped eating solids altogether and his intake of formula dropped by 2 ounces. We decreased his dose & stuck with it for a month because GI upset was a known side effect. When we stopped the Betaine, his appetite did not increase after a couple of weeks, so I agreed to the swallow study. This now allows us to receive help from ECI where his diet is concerned.

So his evaluation with the dietitian is this Tuesday and I’m anxious about her visit. Gideon is not taking the thickening of his liquids well. And we have these random shiny days where he anxiously eats solids…and then it’s back to formula all day for the next few days. The ups and downs are way high and way low, and frankly, I’m getting tired…. and a bit emotional. Especially where this thickening business is concerned. You need cross cut bottle nipples for that. Did you know finding cross cut bottle nipples in the stores here is like looking for Miley Cyrus at a church camp? I’ve been to four stores, one of which was Babies R Us, and NONE of them carried cross cut nipples!!! (That was a bad day and a whole other blog for that matter.)

So would you mind praying, yet again, for our son. I desperately want him to begin eating solid foods consistently again. And please also forgive my frustration on the matter. I knew having a child with special needs would be hard, but it’s all these small battles that seem to be weighing me down.

Most days I feel like I’m treading water so hard just to keep my nose above the surface.

Thanks for your prayers.

Websters dictionary defines milestone as “a significant event in life or history.” I think that’s a fitting description of what today means for our family.

One year ago today, God blessed us with sweet little Gideon. Now I know every child’s first birthday is special. For every parent, such an event comes all too quickly. You look back and think, “Wow, this past year was a whirlwind; can’t believe we made it through the sleepless nights, poop, & tears.” And that’s no less true for our family.

What sets today apart from other first birthdays comes down to a statistic. If you’ve followed my blog, then you know my son has a terminal genetic disorder; and so for Gideon, turning one is truly a milestone. When our son was diagnosed with PBD at 7 months old, our geneticist told us the only statistic she could find for this rare disorder was the following-

An infant diagnosed with peroxisomal biogenesis disorder that lives to one year of age, has a 77% chance of making it to school age. 

Obviously that makes today a pretty big deal for us. And it warms my heart to know that it’s a big deal to others as well.

Yesterday, I took Gideon up to my husband’s school because they took it upon themselves to celebrate his birthday as well. The love we felt yesterday is indescribable. The kids at Abbett all wore their “kiss the pig” t-shirts, had cookies, made cards and brought gifts. Mrs. Wade (sister of Abbett’s librarian, Jennifer) even made Gideon a huge quilt! The teachers and students decorated the outside of my husbands office and even Ellie May (the pig herself) made an appearance. I cannot thank Mrs. Elms and all the staff, kids and parents for loving us so much!

As we celebrate Gideon’s birthday weekend (yes, he gets a whole weekend.. his party isn’t until Sunday), we just want to thank everyone who has lifted us up throughout this past year. It has definitely had it’s ups and downs, but we are wiser and better for them. We’ve learned the true meaning of “every day is gift.”

So please join us in savoring every day that’s given with the ones you love.

Happy Birthday sweet boy.

Nothing else matters but today.

I like to plan ahead so my day goes smoothly. At night, I get the lunches, diaper bag and coffee pot ready. I lay out my kids clothes the night before too. In fact, this morning, I laid out the kids jammies and got the tub area ready before we even left the house. I knew we’d be gone until late, so this was a surefire way to have the kids quickly bathed and in bed immediately upon our return.

Call me OCD or call me crazy, but I’m all about making the transitions in my life easy. However, recent events made me realize that some transitions will never be easy no matter how much planning we do.

Next Tuesday, Kevin and I will be sharing our testimony again at ReEngage. While I’m excited to share our story of redemption, I’m a little uneasy…mostly because I haven’t yet re-written our ending. You see, last time we shared our testimony it ended with us coming out of a storm and celebrating the birth of a new child. Unfortunately for us, there’s a new storm on the horizon. We’ve learned so much in this past year, that I’m having trouble putting it briefly for our audience.

What I want to convey to our ReEngage couples is that you can’t plan around the storms of life… you can only prepare to weather them. While everyone’s journey is different, the truth is that there’s always a storm coming. I’m not sure what storm you’re facing, but for us, it involves the early death of our son.

So if we can’t plan around it, how do we prepare for it?

Kevin and I are preparing the only way we know how- We are praying together, reading the Bible, and being intentional & intimate in our communication & relations. We’re placing our attention on Him. Every time we center our focus on God instead of our circumstances, we are preparing for the harsh winds of life.

All that said, I’m obviously still not looking forward for what’s to come. In fact, I’m a big “why” baby. I’ve often wondered why God would allow my son to be born with this illness. I also wonder why He would send us back into other season of darkness. It’s interesting because just today I read a devotional by Christine Caine and it addressed that very issue. This is what it said-
“God’s heart beats for every lost person every single second of every single day. That’s what he wants us to remember. We, too, were once lost, but now we are found. And because we’ve been found, he has called us to be part of his search-and-rescue team.

Are you willing to take the light God brought to you to illuminate your own rescue, to others? Carrying the light is the only reason God would send you back into the dark.”

Does that last line pierce your heart like it does mine?

I was naive to think that Kevin and I had been through the worst before our marriage. The worst is yet to come. For those who’ve gone before us, I would not dare disrespect you by saying that I know what it’s like to lose a child. I don’t. In fact, there’s a lot of pain and suffering in this world that I know nothing about.

But at the end of the day, I do know this…

There are transitions in life that will never be easy. In the blink of an eye, everything we know can change. The storms of life are coming. You can’t plan around them, so how are you preparing for them?

God doesn’t call us to live in fear of what’s to come.

He just calls us to come.

Matthew 11:28 
“Come to me, all you who are weary and burdened, and I will give you rest. 

Jeremiah 29:11
For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. 

Isaiah 41:10
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

Isaiah 43:2
When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.

John 16:33
“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”